Ontario’s autistic youth deserve better

By Richard Forbes.Featured image via CP.

In an embarrassing about-face, the Ontario government announced this week autistic children, ages five and older, would receive $10,000 in successive direct finding while they plan to expedite their transition to a new Ontario Autism Program for next year.

Michael Coteau, Minister for Children and Youth Services, made said announcement as a desperate white flag to the vicious backlash it’s received from parents and activists alike for its controversial decision to disqualify autistic children over the age of four from Ontario’s wait list for intensive behavioural intervention (IBI) while they waited for the government to overhaul these services over the next two years. Worse still, the financial support parents of these children were previously set to receive during the interim, a mere $8,000, was egregiously insufficient and downright insulting.

The proposed new Ontario Autism Program removes the distinction between IBI and a different form of therapy, applied behaviour analysis (ABA), introduced by then education minister Kathleen Wynne, which was criticized for taking an out-of-school approach where care providers lacked similar training as those under the older IBI regime.

This recent mess however, far from being a one time mistake, is just another footnote to Ontario’s lengthy, seemingly inexhaustible history of letting autistic children and youth down – never missing an opportunity to bungle the whole thing with inconsistent, shoddy access to vital services and a cold, heartless and demonstrably inept bureaucracy.

It was more than a decade ago when Dalton McGuinty in 2003, not yet a premier then, promised parents that his Liberals if elected would remove the cap on financial support the Conservatives had placed on autistic children over the age of six who otherwise would be a candidate for IBI. McGuinty, once in power, broke that promise with great expediency and showed no signs of relenting.

A protester holds a placard at Queen’s Park protesting restrictions to IBI access.

Who pays for these services is no cheery, laughing matter by any means; private therapy at $30,000 – $80,000 per child is prohibitively costly for most, especially working class families – effectively a penalty levied against those parents who just want to see their kids receive the professional help they need to overcome their autism and develop more social, emotional and language skills or even just basic eye contact.

Sounds reasonable, yes? One would hope.

But when the Ontario Superior Court ruled Ontario’s discrimination was unconstitutional – a violation of these children’s rights to equality and access to education, the McGuinty government, rather than surrender and honour the ruling of the court, opted to bring the matter before the Ontario Court of Appeal (where they won.) The Supreme Court would later decline to hear the case, denying a leave to appeal.

That legal wrangling, a weaselly disavowing of responsibility on the part of the Liberals, cost taxpayers at least $600,000 in legal fees, including fees for trial transcripts and expert witnesses, the Attorney General later revealed. Although those expenses would be higher still if they hadn’t neglected to include the salaries of the four or more ministry lawyers and support staff who diligently worked on the public dime to block autistic children’s access to publicly-funded therapy (for the greater good). Those numbers, incomplete as they are, however are only available because NDP MPP Shelley Martel fought for months over Access to Information requests with the McGuinty government, which had worked hard to forestall their publication at all costs if possible.

But the sad irony of all this is health economists found in a 2006 study, rather than the government saving +$11.5m by excluding those over five from IBI, an expansion of IBI to include children over five would save Ontario $45m by reducing their financial dependency.

When those cost savings are considered, the government’s argument that IBI is most effective when autistic children are young grows ever more specious. Especially when the long wait times for IBI/ABA services, a gross backlog of over 16,000 children, often keeps them from receiving therapy for two years. A five year old applicant might be seven by the time they are accepted into a program, despite the government acknowledging the importance of receiving therapy earlier rather than later.

Only Ontario could work so brutally hard towards both wasting money and rolling back services for society’s vulnerable simultaneously. The sheer genius and determination they’ve exercised over the course of the past thirteen years to systematically fail those in need of autism therapy and social services would be applauded if it wasn’t such a cruel, diabolical embarrassment and a damning black mark on Ontario’s mental health record.

Ontario Minister of Children and Youth Services Michael Coteau announces changes to the Ontario Autism Program during a news conference at Queen’s Park. June 28, 2016. (Photo: Nick Westoll.)

My own experience with autism is limited, admittedly. I worked yearly summer camps provided by ABA services for autistic children and youth, ages five to eighteen (and often older), starting when I was an energetic, wild-eyed twelve year old until I was finished high school. At those day camps, autistic kids would buddy with volunteers to play games, simple activities, and just have fun.

I learnt the harder your ‘assignment,’ the less you had to attend (and their seemingly endless walks across camp). So naturally I always took the harder cases: the runners, the hiders, the whiners – give me a good natured asthmatic with a shell fish allergy any day! Jokes aside though, the kids I befriended were all positively wonderful; their funny, vibrant personalities were infectious. My time spent with them was always rewarding. As a writer who spends most of his own time griping over how best express to himself (and barking instinctively at every noise made in the vicinity of his work space), their personal struggle with communication earns them nothing but sympathy and respect from me.

In particular, I remember one boy, who I’ll call Bill, who was terribly smart and inquisitive. Bill, short and underweight, was in many ways quite unimposing, but he had a habit of getting angry. These fits of anger, ‘meltdowns’ as they were called, were getting to the point that, left uncontrolled, he posed a danger to himself and others.

When he, or those around him, detected he was getting close to a meltdown, he’d be ushered to a safe room where he could turn the lights off if he liked and relax (or not); except a bean bag cushion to sit on and some picture books, there were deliberately very few objects in the safe room (so as to not pose a weapon to him).

One time I was walking Bill back from a hike as he began to feel as though a meltdown – frustration with the length of the hike (I feel you, brother) – was boiling over. So I did my best to talk him down. We chatted about his favourite comic book character, Spiderman. I told him Spiderman was my favourite comic book character as a kid too. I even had an anthology of Spiderman’s first run to boot.

“I’m not allowed to watch Spiderman 2,” he said glumly, folding his arms.

“Tis okay, the first one’s better anyways,” I lied.

The appeal of Spiderman, lost on many, is Peter Parker is socially awkward – clumsy but brilliant. Unable to express himself to people, especially pretty blondes. But when he puts on a mask and challenges baddies to street fights, everything changes. It’s the only time Peter can properly express himself and his courage and his deep sense of responsibility. It’s the only time he feels a girl like Gwen Stacy or Mary Jane looks at him and see him for who he really is. Spiderman can be any frustrated boy behind the mask. His figure, unimposing. His snark, the natural tongue of teenagers.

One of the counselors saw me talking to Bill, his face now smiling, rather than on the point of explosion. She snuck two thumbs up and walked away. Crisis averted (for now.)

Bill’s parents were having a hard time taking care of him as his behaviour got more dangerous to himself and others, however. It was only with assistance and coaching from trained professionals (which he received well after he was five), that he learnt how to handle his emotions and states of mind as they changed. Day camps like the ones I participated in were controlled but fun, informal environments for him to practice those social skills he learned. Without counseling and therapy, life would be much harder for Bill and for his parents – that intervention he received early on in life helped him to slowly, but noticeably, improve his ability to control his anger, respect others’ personal space, speak more lucidly and communicate more clearly without repetition.

I saw enough parents picking their kids up at the end of the camp dressed in Tim Hortons attire and grocery store paraphernalia to know the parents and their children who depend on these services the Ontario government has toyed with so haphazardly, are often working class – blue collar families – needing all the support they can get for therapy. Which is what makes this injustice on the Liberals part such a contemptible austerity. Premiers McGuinty and Wynne have both run their administrations with the same ideology, that of the ‘activist centre’ – earning them the nicknames, Premier Mum and Dad. But on the autism file their governments have failed so miserably to show any consistent sense of concern or compassion that their policies seem a far cry from their reputation for taxing-and-spending with a bleeding, insatiable heart.

Autistic children and youth, and really everyone living with mental health issues, deserve an apology and a new deal from Queen’s Park. I’d go as far as to reluctantly echo the Senate’s calls for a federal strategy. This new deal needs to consider the demand for reduced wait-times and broader, more open and inclusive therapy programs with greater variety to meet the diversity of challenges posed by autism on the whole of the autism spectrum. Mental health must be treated as a constellation of modern issues that is interdepartmental: health, justice, poverty, youth, economic development, education etc.

It’s time to stop the lies, the wrangling, the shifting of the goalposts. Wynne, whose administration is behind in the polls and poised to run for re-election, ought to know by now if she wants the moral authority to continue to govern Ontario, she and her administration need to earn it. Gaffes like the one she and her administration created for themselves this week will not endear themselves to the citizens who want to see their health care system meet the provinces’ needs rather than leave children in the cold.

Richard Forbes studied Political Science and Philosophy at the University of Waterloo. Winner of the Peter Woolstencroft Prize in Canadian Politics (2015).

When asked (usually by confused old women) what ‘does one do exactly’ with said degree, he laughs and politely declines to answer. A perfect night for him involves a cup of Lady Grey, some writing and a re-run of Yes Minister.